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Hepatitis
Community News #47 • March 2010
Introduction
The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Fax: Web: Email:
3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au
STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Will Debra Michele Coordinator of Education Programs: John McKiernan Educator: Mahdi Nor Rural Educator: Kirsten Kennington Aboriginal Hepatitis C Educator: Dominic Guerra Peer Education Coordinator: Maggie McCabe
The Hepatitis C Community News has been published since the mid‘90s, and throughout that time has grown and changed. What started as a few photocopied pages stapled together is now a high-quality magazine. But it’s a process that never ends, and we at the Hepatitis C Council want to know what the magazine’s readers want the magazine to be. The magazine currently focuses on articles about increasing the quality of life for people living with hepatitis C, on the latest Australian and especially South Australian political developments which affect those living with hepatitis C, and on interviews with people who live with or work with or study hepatitis C. But is all this what you want? Please let us know. And remember, a survey like this is only useful if we get a lot of responses, so please make use of the prepaid [envelopes], and be in the winning for some great prizes! If you don’t want to be mucking about with paper, visit our website at www.hepccouncilsa.asn.au and follow the links to fill in the survey online.
About the Cover HCCSA’s entry in the Fringe Parade (see pages 2-3). Photos labelled 1 are © Liam Jon [www.flickr.com/ photos/liamjon-d/0], 2 is © R-D-M [www.flickr.com/ photos/38991649@N07/]), and 3 is © Lola Aviles. Jack’s comic strip adventures written and illustrated by James Morrison. Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepccouncilsa.asn.au.
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Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Gauri Karan Mark Phil Philip Yvonne
Contents
Publications Officer: James Morrison
1
Awareness Week 2010
Info and Resources Officer: Rose Magdalene
2
Fringe Parade
ICT Support Officer: Bryan Soh-Lim
3
Nicky’s Story
7
What Do You Do?
7
Library Update
8
Treatment Discussion
BOARD
12
Transplant Research Update
Chairperson: Arieta Papadelos
13
Love Your Liver Lunches
Vice Chairperson: Kristy Schirmer
14
The New Dental Scheme
Secretary: Stefan Parsons
15
Online Mental Health Resources
Project Officer: Caitlin Dowell Librarian: Joy Sims
Treasurer: Darrien Bromley Senior Staff Representative: Kerry Paterson Ordinary Members: Lisa Carter Catherine Ferguson Bill Gaston Carol Holly Shabeena Laundy Justine Price
Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist. We welcome contributions from Council members and the general public. “Look, there’s no other way to say this, but I didn’t come in here to be insulted.” “Well, I didn’t ask for the job of insulting you. In another life, we could have been brothers. Running a small, quirky taveria in Sicily. Maybe we would have married the local twins instead of wasting each other’s time here in this dump. But it was not to be. So hop it.”
Awareness Week is Coming… What the World Hepatitis Alliance is planning New Global Website
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he World Hepatitis Alliance is launching a new global website and blog to promote the ‘This is hepatitis…’ campaign ahead of World Hepatitis Day 2010. The new website will feature updated content and offer users interactive community tools, including the ‘This is hepatitis…’ blog. The blog aims to provide a forum in which people from around the world can come together to talk and learn about viral hepatitis. As part of the new site, 12 people from 12 different countries will have a unique chance to tell their personal stories through the launch of their own blog on the global WHA website. This is a great opportunity for someone with a personal experience of viral hepatitis to help educate people on what it is like living with hepatitis B or C, and to help change how people think about the diseases. The WHA is now at the stage of recruiting the 12 bloggers, and they want your help. Do you know someone who enjoys writing or wants to be a blogger? If you know someone who is already using their writing skills to contribute
to hepatitis council newsletters or campaigns, why not suggest that they get in touch with the WHA about joining the blog. Or does this describe you? If you are interested in contributing to the blog, or know of someone who is, please contact the WHA directly at contact@ worldhepatitisalliance.org.
Viral hepatitis resolution to be put before the World Health Assembly
2010 Australian Launch of Hepatitis Awareness Week
The World Health Organisation Executive Board will recommend a resolution on viral hepatitis to the World Health Assembly in May. If adopted, the resolution would for the first time provide a framework for international action to prevent, diagnose and treat hepatitis B and C.
The 2010 National Hepatitis Awareness Week campaign will be launched on World Hepatitis Day, 19 May 2010 at Federation Square, Melbourne. The 2010 launch will build on the success of the 2009 rock concertstyle launch and have a strong focus on engaging young people and increasing their knowledge of hepatitis B and C. Hepatitis Australia and Hepatitis C Victoria are working together to create an exciting and engaging national launch.
In addition, the resolution would provide global support for an official World Hepatitis Day to provide a focus for national and international awareness-raising efforts. “The adoption of the resolution by the World Health Assembly in May will be a clear statement that viral hepatitis now has the same priority as the other major world diseases,” said Charles Gore, President of the World Hepatitis Alliance. The 63rd World Health Assembly will take place in Geneva from 17 May until 21 May, 2010.
For more information on SA’s Awareness Week events, see page 11.
Hepatitis C Community News March 2010 •
This page: preparing for the Fringe Parade Opposite PAGE: The Parade, 19 Feb ing 2010, featuring HCCSA people in flow ing red robes, and a red liver blow bubbles w. (Photo at top right © Liam Jon [ww om bott flickr.com/photos/liamjon-d/0], and right © R-D-M [www.flickr.com/ photos/38991649@N07/]) Hepatitis C Community News • March 2010
Hepatitis C Community News March 2010 •
Nicky’s Story On art, being black, and having hep C—and hep C treatment
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found drugs at the same time as I found black history, which was part of studying for a welfare diploma. I didn’t know that much about my culture, where I’d come from, or my identity before this. All of a sudden I could see how my own family had been through history. I lost my mother when I was 13 from a drug overdose and there was a lot of drug, alcohol and violence in the community. I could see there were reasons for this that I’d never realised. I started to reflect a lot. Unfortunately, at the same time I was studying, I was introduced to drugs as well. I began to question why I was studying welfare when I had so many problems to sort out from my background. I think in a lot of ways I used drugs to medicate myself. Speed was my drug of choice, and when I was on it. I felt confident, as though I could handle anything. When I wasn’t, I felt hopeless and confused. Hep C was a positive thing in some ways, a wake-up call to change my life. When I was diagnosed, I could see straight away that hep C was a direct consequence of what I was doing, how I was living. I’d never thought about
my health, never thought about how important it was to my living. I was just into drugs and drinking. Looking back, I had three options opening up for me: homelessness, prison or death. My life was in chaos. I freaked out when I got the diagnosis over the phone, because I thought it was a death sentence, and that I would never be able to have children. There wasn’t much information available about hep C then. This made me get into drugs a lot heavier, but eventually your body kicks in, takes over, and says, “Nah, you’re really sick!” So eventually I stopped using. It was tough. I had the physical symptoms of withdrawing from the drug. It was weird; for a while whenever anyone mentioned speed it was like my body would go into a sort of jolt, like it was remembering the effects of speed. I also had to withdraw from most of my friends and spend a lot of time alone. I did feel very lonely at times, but I knew that I didn’t want to go back, and I knew that the people I did drugs with weren’t “real mates”.
I remember one day my uncle (Mum’s brother) arrived at my door, without saying much he put me in the car and drove me eight hours back to family land near Gladstone. He’d heard on the grapevine that I wasn’t good. He got a couple of his friends to take me out fishing every day to keep my mind off things, and he gave me fish to eat, day in, day out for a month. I think he thought it would be healing, and it was.
Hepatitis C Community News • March 2010
I’d already started some counselling through an Indigenous health service and this helped because before I even knew I had hep C, I had begun to slowly question my drug use and how I could reduce it. I used rehab and went to Narcotics Anonymous. When I came out of rehab, I felt drawn to go to church one day. I’d gone to a Catholic school as a kid. I remember going up the steep hill to the church, noticing a syringe lying on the ground, and I remember I carried on walking, putting it behind me. I ended up dropping out of the welfare course. Someone saw me doodling one day on a piece of paper; I used to sit around and doodle a lot, and they said, “Why don’t you study art?” There was a course at the Koori Institute of Education, (part of Deakin University) in Melbourne. There was a lot of support there, and the study was organised in blocks so you could still live at home and they flew us in to do the courses. So I did that, and after a few years, I graduated with a BA (Fine Art).
Even though I was still using for part of this course, it’s true that art formed a big part of my road to recovery. At first I found it hard to be open about my hep C. I didn’t talk to anyone about it, but I went to a support group, and it was good to hear other people talk about their difficulties living with hep C; about the symptoms, about not being able to get through a day without a nap, that sort of thing. I had a friend who was working in the community and she was
giving a talk on hep C one day and persuaded me to come along to be her “person with hep C”. So I went from not telling anyone, to telling the whole community at once. It wasn’t so much of a problem, people at the talk were all engaging in the sort of risky behaviours I had done, so they were supportive. I like to use my experience to help others, so opening up and telling people was doing just that. I think people at risk of getting hep C should know about it before it happens to them. I’m always telling people, “Careful, don’t do that! Remember hep C, it could happen to you, it happened to me.”
I had to try treatment because the hepatitis was really affecting me; I felt sick if I ate anything fatty, and I was struggling to get through a day at Uni; I was just so tired and couldn’t concentrate. I think I was the first Indigenous woman to do six months treatment and clear. I never knew it was such a big deal at the time, but now I do. I still wake up some days and think what if I hadn’t cleared? Treatment was hard going at times. I told myself if I could give up amphetamines, I could handle anything treatment might throw up. I planned it a bit. My partner and I talked about what might happen, so she knew what to expect. I told her that I didn’t understand what the specialist was saying, so she came to the appointments with me, and afterwards, she would remember and tell me what he had said.
Artwork © Nigooli
I did treatment in 2001 after being clean for two years. When I gave up drugs I started setting myself goals. One of the prerequisites for treatment at that time was that you had to be clean for two years [This is no longer the case - Ed.]. So staying clean was linked to being able to do treatment.
I took anti-depressants because I knew I had vulnerability there. I went back home to Bribie Island (Queensland) where my family are from. I realised that I would need to be around them. I knew if I had a bit of support, I would be right, and I was.
My family was wonderful. Dad put in a bit of money so I could design and sell t-shirts. My partner also looked after me. I would sleep after my injection and wake up to a clean house with the smell of dinner cooking. She just took a lot of stress out of it all.
I spent my time on Bribie fishing, painting, doing the markets. It was a really productive time for me in terms of my art. I did more on treatment than I ever have since. I knew I didn’t want to just sit and mope so I kept painting.
I looked after my niece who was doing her last year of high school. She knew Aunty was doing treatment and that she had to be good.
I was just producing and producing. I managed to win the Robyn Ochin art award, and got nominated as one of the top 100 Indigenous artists during that time.
Even though I took the antidepressants, I was still emotional and quick to react. I got so bad at one point that I thought I might pull out of treatment. My youngest sister had been in a car accident, and was in the Intensive Care (continued over page) Hepatitis C Community News March 2010 •
Continued from page 5 Unit. We thought we were going to lose her. This made me very emotional and I felt like I couldn’t cope, but I did.
saw the tat and said, “That’s your totem!” Totems are important for Indigenous people; it’s part of your identity, part of who you are.
When I’d go off the deep end a bit over things, my partner would just grab me and hold me until I calmed down. Going through treatment strengthened our relationship in lots of ways.
These days I work as a Project Officer for the Hepatitis Council of Queensland. I never thought I could do this job, but everyone at the Council always did. They knew. I run art workshops in local
to a mainstream medical centre, and probably wouldn’t know they had been at risk. There’s a big shame factor with Indigenous people and hepatitis. It prevents them from getting tested or openly talking about it or doing treatment. In my work I try to teach people gently, that it’s important to put that shame aside Photo © Thinboyfatter
Bribie Island I’d been clean and post-treatment for a good while when I went off on my own to Hervey Bay (Queensland) for a bit of time out. I was still in a process of change at that time. I felt I wanted to do something to symbolise all the changes I’d been through and what I wanted for the future. I went to a tattooist and was really drawn to a design of a manta ray. I wasn’t quite sure why, but it seemed to symbolise the ocean around me there and then, but also the ocean that surrounded the land where I grew up. Obviously, I knew there were risks in tattooing, so I checked that the artist used a fresh needle and checked that he was aware of safe infection control and when I was happy with that, I went ahead with my tattoo. After all this, I returned to the city and seemed to settle down a lot more. About a year later my uncle Hepatitis C Community News • March 2010
Indigenous communities. People come along to the workshops; art is the hook that gets them in. That’s when I talk to people about hep C. Indigenous people are visual people, so you need pictures. I show pictures of scarring and the virus, and pictures of tattoos and such. I do have concerns about freaking people out about it, so I use myself as an example of how you can get through and have the treatment. You have to build up trust working with the community and it takes some time for the messages to get out. Doing the artwork helps people feel more relaxed, which makes it easier to deliver the message. During a workshop, people might come up quietly and ask me, “Have I been at risk, should I get tested?” They feel safe enough to ask me. These people wouldn’t go
for your health. I never knew that I would have such a passion for this work. Empowering people to take care of their health makes me feel good. If I can get just one person in the workshop to consider testing if they have been at risk, then I think it’s been successful. Nicky Newley (Nigooli), 42, is a Wuthathi woman and gifted painter. Her family heritage on her grandmother’s side is from Shelburn Bay Cape York Peninsula and from her grandfather’s side from Darnley Island in the Torres Straight Islands. Nicky lives in Brisbane with her partner. She is believed to be one of the first Indigenous women to undergo treatment and clear the virus. Reprinted by permission from ‘One in Twelve: Treatment, Life, Hep C & Me’ written and edited by Charlie Stansfield for Hepatitis Australia. http://www. hepatitisaustralia.com
What Do You Do? Meet the Council’s staff
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ominic Guerrera recently started work at HCCSA as Aboriginal Hepatitis C Educator. We had a quick chat to find out about his role and his plans for the Council’s approach to indigenous South Australians. What’s your background? Where were you before you joined HCCSA? I worked at Nunkuwarrin Yunti for 6 years in two positions, in the areas of health promotion, bloodborne viruses, with homeless/ transit people, and workforce support for the Social and Emotional Wellbeing workforce. I left Nunkuwarrin Yunti early last year and moved onto the Aboriginal Sobriety Group, where I worked at a men’s hostel. What does your role at HCCSA entail? My role covers three main areas:
• providing education and training to the workforce who provide services to the Aboriginal and Torres Strait Islander Community, • providing education and awareness to the Aboriginal and Torres Strait Islander Community of South Australia, and • creating a DVD resource about hepatitis C treatment, in conjunction with an Aboriginal and Torres Strait Islander work group. What do you think is most vital, regarding hepatitis C, for Aboriginal South Australians? I think there is a real gap when it comes to resources and promotional materials, which leads to a lack of awareness. It’s quite scary to see how unaware our communities are of hepatitis C—particularly when it has such a big impact on them.
What do you hope to achieve over the next 6 months? There are a million and one things I would like to complete, but I have to remain sane about the prospects. I am focusing on the DVD resource and trying to make as many connections as possible between the Hepatitis C Council and key Aboriginal health organisations. You can contact Dominic at dominic@hepccouncilsa.asn.au.
Library Update Help us get back missing items! The following resources have gone missing from our library. Some of them are out of print, and so irreplaceable. If you have any of them, please return them to the Council at 3 Hackney Rd, Hackney. There is an amnesty on these: no questions will be asked! BOOKS
COMIC
• National Hepatitis C Resource Manual. 2nd Edition
• Risky Business (2 copies)
• All You Wanted to Know about Hepatitis B: A guide for primary care
CDRS
• Guide to Healthy Supermarket Shopping
• Your Guide to Pegasys Self Injection
• The Hepatitis C Cookbook
• When Sharin’s not Carin: Harm minimisation training
• A is for Attitude: A little book of inspiration and encouragement • National Hepatitis C AntiDiscrimination Project 2002-2003
DVDS & VIDEOS
• The IAT Guide to Hair Loss
• Staying Safe In Prisons - Hepatitis C
• Stretching Scientifically: A guide to flexibility training
• My Habit, My Child
• Smokenders
Hepatitis C Community News March 2010 •
Treatment A discussion about hep C, treatment, and dealing with side-effects
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ecently, several people at the Council who have undergone treatment for hepatitis C agreed to sit down and discuss their stories. It was a fascinating conversation, and we’re printing the highlights here, so that readers can learn more about some individual experiences of treatment. Because of the amount and depth of material covered, this will continue in our next issue. This first part looks at why people make the decision to undergo treatment in the first place, and how they deal with it once they start. Will, Jay and Mary have all recently finished their hepatitis C treatment. WILL: I’ve actually had two lots of treatment. The first time was in 2004, but I relapsed after that. The second lot of treatment, the full 48 weeks for genotype 1, I finished just prior to Christmas 2009. JAY: I started my treatment in November 2008, and finished in October 2009—48 weeks, genotype 1 like Will. I’ve only been on treatment once. WILL: I’m not sure why the first round of treatment was unsuccessful. Many people do relapse, and for all of the studies they’ve done, they’re still unable to pinpoint the reasons why it happens for many people. At the end of treatment, the virus was undetectable, but six months later it surfaced again. For those six months I was very positive—I put all my energy into it, saying, ‘I’m going to beat this thing.’ When I found that I hadn’t cleared it after all, I was OK at the time, but then five weeks later I just hit the wall. I became severely depressed. Having relapsed didn’t stop me going for a second lot of treatment, which I was offered as part of a medical trial. I’m just determined to get rid of it! What makes someone decide that it’s the right time for Hepatitis C Community News • March 2010
treatment? Does finding out a lot of information help make the decision?
years. It confirmed to me that I’d made good choices about how to live with my hep C.
JAY: I’d known I had hep C for about 19 years. I’d considered having treatment at the very beginning, but at that time the criteria for treatment was that you had to have a high level of liver damage or fibrosis, which I didn’t, and there was only a 25% success rate. So instead, I decided to eat healthily, stop drinking, and do more exercise.
I considered waiting another five years, to see if there would be treatments that were less severe. Then another conference came along, and I was back to ‘I’m going to live!’ and ‘I’m going to die!’. So I told my family that I had made the decision to go on treatment.
But then I started working at the Council just under three years ago, and I was engaging with community, hearing peoples’ stories, and hearing doctors and researchers speak, and it got to a point where I wasn’t quite sure any more whether I was going to live or die. I’d be sitting in a conference, hearing the latest research, and going from ‘I’m going to die!’ to ‘I’m going to live!’ and back again. Then I had my second biopsy, revealing level two fibrosis, which was still a good prognosis after 30
MARY: In 1995 I was offered monotherapy, but I didn’t do that, and I’m really glad I didn’t. I had other things to do in my life—I had a young daughter not long after that, so it would have been really hard. I’d go along to the doctor every six months and have a liver function test, and it would be fine, so I’d think, ‘Cool, no worries!’ and go about my business. It didn’t really feel as though I had hepatitis C. But then around 2002 I started to feel sick a lot. I was always getting tonsillitis. I’d quit smoking and doing drugs, but I didn’t feel as though I was getting better. And I had depression, which people
Cartoons © James Morrison
to the conclusion that he was a little bit loose in the head. Because I’d contracted and cleared hep B in the ‘80s, I asked him specifically to test me for HIV and hep C, as I’d been an intravenous drug user. I didn’t worry about the hep B, because I knew I’d already had it. But the doctor kept coming back to me and saying, ‘You have hepatitis antibodies.’ But he’d never specify whether he meant B or C. So for three years he had on his records that I had hepatitis C, but he would never tell me that. Meanwhile, I knew in my body that something was wrong—you can feel it—but he diagnosed me with depression, with an eating disorder, various other things, and I was given various medications, but none of them were the real problem. And I was drinking a lot, self-medicating, which was destroying my liver without me knowing about it.
told me was related to hepatitis C, though I thought that was crap—how could your liver and depression be related? But now I was feeling that hep C was real in my life. WILL: It depends so much on the individual as to how much information you want to take on. With my experience of being on the Info and Support Line, a lot of people hear what the possible sideeffects are and say, ‘No, I don’t want to take that on.’ If I personally am talking to someone contemplating treatment, and they ask if they should take it on—which can be a very hard question to answer—I’d say to the person that you have to weigh up the situation yourself. Look at where your life is at this stage, look at your health status, at the doctors
you have, the support system that you have. Don’t worry so much about the side-effects. Some people experience them more severely than others. Even having plenty of knowledge about hep C, I have had times when I’ve got very, very worried, feeling that I was going to die. At times during treatment the fatigue was terrible. I felt very bad. I had a friend who died from hepatitis C, back when it was called non-A, non-B hepatitis. I was visiting him in hospital as he died, with his liver decompensating, and it was not a very nice way to die. Seeing this was horrible and frightening for me, even to this day. I didn’t know I had the hep C virus until 2003. I’d been seeing a doctor for years, but I was coming
Then I went into hospital with blood poisoning from a cut in my leg—an ambulance was called because I collapsed—and when I’d been there for a number of days, a number of doctors and nurses came to me, saying, ‘Do you realize that you have the hepatitis C virus?’ It floored me. It was confusing, because I couldn’t see how this could be, since I’d had tests. I became very, very angry. Another problem was that there was no way for me to take the doctor to task. At that time I started going to the Hepatitis C Council. I didn’t know much about the virus back then, but I decided to go on treatment pretty much straight away. JAY: For me, finding out lots and lots of information about hepatitis C and treatment and the experience other people have had wasn’t so important. What I had to do was to get a sense of clarity about what I needed. If there was a group study on 500 copies of me, then those statistics (continued over page) Hepatitis C Community News March 2010 •
Continued from page 9
NOT MORNING AGAIN!!!
would reflect something very different. It’s easy for an individual to take on those symptoms and side-effects that research has suggested. To detach the research from myself was helpful. I was going to take charge of the experience, not be another case in the generic statistics. So how did you cope with treatment itself? JAY: Working in an organisation where lots of people know about hep C, I made the decision not to tell many people about it. I didn’t want my life to just be about the treatment, with people always enquiring about me and my health. I know people were enquiring from a position of care, but those questions aren’t always what you need. I made the decision that I was having an injection once a week, six tablets every day, a blood test every six weeks, and an appointment every six weeks, and that if I focused the entire eleven months on those factors, that would be enough. I have a family to be a part of, a workplace to be a part of, a social life to continue with. I decided that this was going to be a year where I was just there for myself, which was a challenge, and I set up three people in the Council with whom I made very clear boundaries— ‘Don’t ever talk to me about my treatment, but if I want to talk to you I will.’ Those boundaries were very important. If I wasn’t thinking about it, I didn’t need people to remind me about it. And I think it’s very lucky that I was working, because if I’d been sitting around at home, I would have sunk into my negative feelings. I woke up every morning and it was as though there was a big black hole, just inviting me to jump in and feel sorry for myself, and experience every little symptom. But every day for eleven months I was able to say, ‘No, I’m Hepatitis C Community News 10 • March 2010
not going there. I have a life to lead and work to do.’ I always felt I had a choice to either sink into depression, as tempting as that was, or to rise above it. WILL: Waking up each day, it really was an incredibly hard thing. The fatigue that I felt while I was on treatment, both times, was incredible. I’d wake up each morning and my eyes would feel glued together. I kept on drifting back to sleep. It was too much effort to get up and face the world. And that black hole was waiting there for me all day. I was volunteering at the Council, and I took on training while I was on treatment, because I had a need to learn about the virus. What I was hearing was not necessarily what I wanted to learn, but I was determined to get as much information as I could. But then at the end of the day I’d sit down, and it was so easy to go to sleep. I’d sit down, drink a glass of water, and then half an hour later I’d be too exhausted, and feel too horrible, to get up and get another one for the dry mouth I was experiencing. I just couldn’t get out of the chair. JAY: I enjoy swimming, and I made a decision that, every time I really
didn’t want to go swimming, I would go swimming. I started running again, and I did exercise three or four times a week. I was just determined to make myself get up and have a normal day and life. That was the deal I made with myself when I went onto treatment. I always felt I had a choice. WILL: My situation was a bit different. I’m on a disability support pension, and exercise, except for a bit of walking, was virtually out. I knew I needed to keep myself motivated, and exercise helps with that, but I didn’t really have that option. Were there any good things about being on treatment? JAY: Look, I feel that if I could be on treatment, with all the sideeffects, for 48 weeks, and do my job, and keep up with my life—I have a 16-year-old son, and our relationship is still sound—then I can do anything. There’s nothing that can stop me. I went feeling I’ll either succeed in clearing or not. There’s nothing I could do to change that. It sounds corny, but for me the treatment was a journey, and it was a journey that was valuable in itself.
Awareness Week in SA In the end, when I get the sixmonth test results, I’ll either be excited or disappointed. And if it’s disappointment? Well, we all need to be able to deal with disappointment. WILL: The first time I was on treatment, the good thing was the opportunity to learn a lot more about the virus. The second time was different—I was on a medical trial, which worked a bit differently than the first time, and there was an extra medication, with its own side-effects, which were really, really bad. But I’m very lucky. I’m in a church group, which has given me a huge amount of support. I got a lot of help. I have three very sincere friends who’ve helped me a lot. One man, who’s working, would call in, take away my washing, and bring it back cleaned and ironed for me. He’d sweep the floor for me. I was getting meals from people in the church, who would come and visit me. I applied to Ministry Care for extra help, because of my extra incapacitation, and I was getting cleaning once a month in my home, which was changed to one a fortnight. MARY: The best thing about being on treatment—besides finishing it—was being able to get treatment! I was first diagnosed in 1992, it wasn’t available. I’d see doctors who’d say my liver function tests were fine, so I probably wouldn’t be eligible anyway. It wasn’t until I went to a second doctor, in a program that the Hepatitis C Council had set up, who MOSAIC referred me to, that I found out about PCR tests. So it was finding out I was eligible, and getting to a place in my life where I could handle treatment— that was the best thing.
Continued next issue...
This is hepatitis. Get the facts.
T
he 2010 national theme for Hepatitis Awareness Week in Australia is “This is hepatitis. Get the facts.” The national campaign will focus on both hepatitis B and C with the aim of raising awareness about the availability of testing and treatment. SA Launch Photographic artworks will form the backdrop for the Week’s launch on 19 May. The occasion will also be opening of the C Pix Exhibition. The exhibition will be the culmination of a series of photographic art workshops held by HCCSA in partnership with youth services. Resources To support services in focusing on hepatitis with their clients, we will be providing posters bookmarks and other printed information which could be distributed or used in displays.
week. HCCSA is developing a simple, liver-friendly cookbook as well as a simple physical activity book which we hope to test with selected target groups during Awareness Week. If you would like information and support in holding a Love Your Liver lunch with your client group or at your workplace, please get in touch with us. Call 8362 8443, ask for Cecilia. Alternatively, email cecilia@hepccouncilsa.asn.au. Looking Good Also as part of the Hepatitis Awareness Week campaign, we are printing T-shirts in a range of bright colours, with a “Love Your Liver” message. If you would like to have free T-shirts for you and your colleagues to wear during the week, send us an email or give us a call. So far, orders have been received from liver clinics, CNP sites and agencies working with people from non-English speaking cultural backgrounds. Colour O’liver
Activities HCCSA is encouraging services to hold liver-friendly lunches as a way to engage their clients around hepatitis and, through that, where appropriate talk about testing and treatment. HCCSA will be holding lunches during the week at Community Food SA’s food store which is frequented by many new immigrants. Our peer educators will be holding Love Your Liver lunches at several Clean Needle Program sites throughout the metropolitan area and our Bhutanese women’s New Feast group will also be holding a liver-friendly lunch to mark the
As in previous years, we will be holding a children’s colouring competition through a number of metropolitan libraries and some rural libraries. The competition is open to all children, so if you have a child care facility which might like to participate or young family and friends who are artistically inclined, call us on 8362 8443. Competition runs from 22 March to 19 April. The highlight of this activity will no doubt be the judging, something we are all looking forward to! Cecilia Lim Hepatitis C Community News March 2010 • 11
Transplant Research Updates
I
f you have hepatitis C and receive a liver transplant, what are the chances of the virus attacking the new liver? According to a study from Toronto, Canada, “Hepatitis C virus (HCV) reinfection after liver transplantation is universal and progresses to cirrhosis in 10% to 30% of patients. Several risk factors are associated with progression.” The study, by J. Madill and colleagues, was published at the end of last year in the journal Transplantation Proceedings. Molecules called free radicals can damage human cells, including liver cells. These molecules form naturally whenever the body metabolises oxygen, so the damage they cause is called oxidative stress. The study found that oxidative stress may be involved in cirrhosis, because it has a role in the pathogenesis of HCV. To determine whether HCV liver recipients with disease recurrence are more oxidatively stressed than those with no recurrence, tests were performed at 12 months posttransplantation, and in a subgroup of patients at 6 months. Liver lipid peroxidation (LPO), antioxidant potential, plasma vitamin E, retinol, and vitamin C levels were all measured as part of the tests. Demographic data, pretransplantation viral load, general medical measurements, and three-day food records were also obtained.
months post-transplantation. Those with recurrence at 12 months had significantly higher hepatic LPO at 6 months. Significantly, recipients of HCV livers with recurrence are more oxidatively stressed at 6 and 12 months compared with those with no recurrence. “Accounting for viral load and donor age, oxidative stress was independently associated with recurrence,” wrote the study authors. However, they did note that more research is needed to confirm this association. For more technical information, see ‘Hepatic Lipid Peroxidation and Antioxidant Micronutrients in Hepatitis Virus C Liver Recipients With and Without Disease Recurrence’ in Transplantation Proceedings, 2009;41(9):38003805). According to a study from Hannover, Germany, “It has been supposed that liver transplant recipients with hepatitis C virus infection have a higher incidence of infectious complications after transplantation. This study was designed to investigate whether neutrophil function is immediately affected by liver transplantation.”
Neutrophils are a type of white blood cell. Among other functions, they help the body’s cells kill and digest microorganisms. If their abilities were compromised or altered by the transplantation process, it’s possible to see how that could lead to higher rates of infection. According to B. Juttner and colleagues, the study’s authors, “Biochemical values, plasma levels of myeloperoxidase (MPO), hydrogen peroxide production of neutrophils and neutrophil-platelet complexes were analysed in 32 patients who underwent liver transplantation and 20 healthy volunteers.” The results of these investigations “suggest a reduced post-operative neutrophil activation in liver transplant recipients suffering from post-hepatitic cirrhosis, compared to cirrhosis due to other causes.” “We hypothesise that neutrophil dysfunction in those patients depends on the underlying disease with an increased susceptibility to bacterial or fungal infections.” Juttner and colleagues published their study, ‘Reduced postoperative neutrophil activation in liver transplant recipients suffering from post-hepatitic cirrhosis’, in the journal Clinical Transplantation, 2009;23(6):921-929).
When the data was analysed, recipients of HCV livers with recurrence had higher liver LPO than those with no recurrence. A significant relationship was found between liver LPO and HCV recurrence, and this significance continued when accounting for pre-transplantation viral load and donor age. Six patients with recurrence and eleven with no recurrence also had measurements obtained at 6 Hepatitis C Community News 12 • March 2010
A newly transplanted liver in situ
! e e r F LOVE
YOUR R E V I L ! s e H LU NC
Healthy, liver-friendly lunch anyone? HCCSA peer educators have been honing our culinary skills cooking and sharing “love your liver” lunches. We have been trying out interesting recipes, eating and reviewing the results! We are now eager to share our lunches with others.
The Hep C Council’s Peer Educators are providing Love Your Liver Lunches at various sites around Adelaide.
• Every fortnight on a Wednesday at Community Food SA, 30 Cromwell Rd, Kilburn, 11am to 2pm • Every 3 months on a Thursday with SAVIVE, at the Parks, 12:30 to 3pm (starting March) • Every 3 months on a Wednesday with SAVIVE Norwood, 12pm to 3pm (starting March) • Every 3 months on a Friday with SAVIVE Noarlunga, 1:30pm to 4pm (starting March) • Lunches at SAVIVE at Port Adelaide and Shop Front to be announced soon
Enquiries: please contact Maggie 8362 8443 For our Love Your Liver recipes, please go to www.hepccouncilsa.com.au.
Keep a look out for us in your travels, ‘cos there really is such a thing as a free lunch!
Hepatitis C Community News March 2010 • 13
How you may be able to access $4000+ of dental treatment
W
ith an ageing baby boomer population the Federal Government has, in recent years, moved strongly towards preventative medicine, especially for those with chronic and complex conditions. Living with chronic hepatitis C fits neatly into this category and one of the areas covered is dental services. Obviously there are specific criteria to be met with regard to accessing these services. The Department of Health and Ageing’s information regarding these dental services is summarised as follows: • Medicare dental items (items 85011-87777) cover services provided by dentists, dental specialists and dental prosthetists in their surgeries (ie services to admitted hospital patients are not covered). • Eligible patients can receive up to $4,250 in Medicare benefits (including Extended Medicare Safety Net benefits where applicable) for dental services over two consecutive calendar years. • Eligible patients are those with a chronic medical condition and complex care needs being managed by a GP under specific Medicare care plans. • The patient’s oral health must also be impacting on, or likely to impact on, their general health. • The patient must be referred by their GP to a dentist (or in some cases to a dental prosthetist) in order to access Medicare benefits for dental services. • A comprehensive range of dental services are covered, including dentures. • The Medicare items are based on the existing dental schedules Hepatitis C Community News 14 • March 2010
used by the Department of Veterans’ Affairs (DVA) with some modifications. • Unlike the DVA arrangements, dental practitioners may choose to either bulk bill the patient or set their own fees for services. Those wishing to access this scheme must see their GP and, if eligible, enter into a GP Care Plan. The GP may then refer them on to a dentist, dental specialist or dental prosthetist. Should a person need to be referred further to a dental specialist or prosthetist, the dentist can do this without requiring an additional GP referral. It is important to check that the GP refers you to a practitioner who is registered with Medicare Australia and willing to take referrals for dental services under Medicare – not all are. If you believe you are eligible for these services, it might be a good idea to first check which dentists in your area are both registered with Medicare (not all are) and prepared to participate in these scheme before you see your GP. Dental services covered under the scheme include dental assessments (which may attract a fee or co-payment not covered by Medicare), preventive services such as cleaning and scaling, extractions, fillings, restorative work and dentures. All of this work may, depending on the dentist involved, attract a co-payment, particularly dentures. Dental treatment provided by public dental clinics or to in-patients in a hospital is not covered under this scheme, even if patients are admitted for the purpose of receiving dental treatment. Neither are dental services that are purely cosmetic in nature covered under this scheme.
Not all dentists will bulk bill and it is important to note that dental practitioners are free to set their own fees. They are, however, required to provide a written quote before beginning treatment. In the event that a dentist does not bulk bill there may be an amount that will not be covered by the Medicare rebate and will need to be paid by the individual. This, obviously, will vary depending on the treatment and the fee charged by that particular practitioner. Lyn Tolliday Information was adapted from Information for Patients and Information for Dentists and Dental Specialists from the Dental Services Under Medicare for People with Chronic and Complex Conditions fact sheets, published November 2009. Further information can be found at www. health.gov.au/dental. With thanks to Hepatitis WA.
Show your smile!
Teeth image © e³°°° Dog image © cutglassdecanter
Medicare Chronic Disease Dental Scheme
eMinds
Coffee
Free mental health resources online
The good news!
T
he e-hub research and development group is based at the Australian National University and provides online mental health services based on the best available scientific evidence. All of these services are free to consumers, anonymous and available 24/7. Currently, the e-hub consists of 5 sites. BluePages www.bluepages.anu.edu.au Comprehensive, evidence-based information about depression and its treatment (including medical, psychological and alternative therapies). BluePages also includes interactive depression and anxiety quizzes, descriptions of the experience and symptoms of depression, a relaxation download, and extensive resources for help.
MoodGYM www.moodgym.anu.edu.au A popular interactive program that teaches cognitive-behaviour therapy skills for preventing and coping with depression. MoodGYM has been extensively researched and its effectiveness has been demonstrated in randomised controlled trials. e-couch www.ecouch.anu.edu.au This interactive self-help program includes modules for social anxiety, generalised anxiety and depression. It provides self-help training drawn from cognitive, behavioural and interpersonal therapies as well as relaxation and exercise. Modules for panic disorder, bereavement and relationship breakdown will be deployed in 2010. Beacon
BlueBoard www.blueboard.anu.edu.au Online support group for people affected by depression, bipolar disorder and anxiety disorders. It aims to destigmatise mental disorders, and to provide support, hope and opportunities for sufferers and carers to share successful coping strategies. The group is run as a moderated bulletin board with strict protocols to enhance safety.
www.beacon.anu.edu.au Provides consumers and professionals with information about e-health online applications for mental health and physical health disorders. Websites throughout the world are reviewed and ranked by a panel of health experts. Consumers can also submit rankings and comments. Participation is free and anonymous.
R
ecent research provides some welcome news for people with hepatitis C who also like their caffeine: people with both chronic hepatitis C and advanced liver disease who drink three or more cups of coffee a day have a 53% lower risk of liver disease progression than noncoffee drinkers. The study, led by Dr Neal Freedman of the National Cancer Institute in the US, “found that patients with hepatitis C-related bridging fibrosis or cirrhosis who did not respond to standard disease treatment benefited from increased coffee intake.” This is particularly good news, as people living with hepatitis C are much more used to being told they can’t enjoy certain foods or drinks, for fear of the effects they might have on the liver. Freedman’s team determined that black, bitter coffee was the best choice. Once sugars, sweeteners or dairy products like milk or cream are added to the coffee, this may have other negative health effects. For the best results, keep your coffee strong!
For more information, see the study, ‘Drinking coffee slows progression of liver disease in chronic hepatitis C sufferers’ in the journal Hepatology.
Coffee beans © Sean Dreilinger
Jumping Brain © Emilio Garcia
With three or more cups cited as the optimum number, drinking more than three cups did not necessarily have any increased positive effects, and it is likely that drinking too much caffeine could lead to other problems with blood pressure, sleeplessness and heart palpitations.
Hepatitis C Community News March 2010 • 15
Are you happy with your GP? If you are, we need to hear from you.*
Individual Membership will continue from year to year without the need for renewal, as long as contact details provided remain current. You are able to resign your membership at any time. To update contact details for continuing membership or to resign your membership, please phone HCCSA Administration on 8362 8443.
We are updating our Hep C-friendly GP list for metro and rural areas. Please call Deborah on 1300 437 222. *We approach GPs for permission before putting their names on our list, and we do not reveal who nominated them.
Hepatitis C Community News 16 • March 2010
Useful Contacts & Community Links Hepatitis C Council of SA
Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council. Call the Council’s Info and Support Line for information on 1300 437 222 (for the cost of a local call anywhere in SA).
MOSAIC & P.E.A.C.E.
Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services. MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds. (08) 8223 4566
Nunkuwarrin Yunti
An Aboriginal-controlled community health service with a clean needle program and liver clinic. (08) 8223 5011
Clean Needle Programs
To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340
Partners of Prisoners (POP)
Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8210 0809
SAVIVE
Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet. (08) 8334 1699
Hepatitis Helpline
This hotline operated by Drug and Alcohol Services South Australia provides 24hour information, referral and support. Freecall: 1800 621 780
SA Sex Industry Network (SA-SIN)
Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666
Vietnamese Community in Australia (SA Chapter)
Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program. (08) 8447 8821
The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care. Call the Hepatitis C Council for a referral on (08) 8362 8443.
Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities. (08) 8362 0395
AIDS Council of SA (ACSA) Aims to improve the health and wellbeing of gay/ homosexually active people, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community. (08) 8334 1611
Are you interested in volunteering with the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services.
What’s safe and what’s dangerous? toilets? sharing food?
So you’ve got some questions about hepatitis c?
will i get better by myself?
that’s all fine! it’s just blood-to-blood contact you need to worry about.
About 25% of people who contract hepatitis C clear the virus from their bodies without treatment.